Grover's Disease: What works to help find relief?

Posted by 43219876x @43219876x, Sep 23, 2016

I have been diagnosed with Grover's disease under my breasts. I had a biopsy for diagnosis. Tried topical ointment with no really good results. Any ideas?

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@robrash

Hi, I am new here and reading through the posts here and on other sites it is very interesting to read how others handle their GD. Mine started a couple of years ago but was only diagnosed from punch biopsies a couple of months ago. The first thing I did was stop wearing conventional bras and changed to oh so comfy and breathable bamboo shaper bras with no seams or wires. The rest of my body is covered in rashes but none under my breasts.

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Any suggestions for bras? I’ve been looking as my current flare is not responding to treatment. Thanks on advance!

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@ethanmcconkey

Hi @jameswb and welcome to Connect! You may have noticed that i moved your post on Grover's Disease to this existing discussion so you can read what others have posted, and can learn more from their experiences.

It must be difficult to be dealing with the same disease as your wife.

I wanted to introduce you to @gardeningjunkie @robrash and @ptownmama as they have Grover's and may be able to offer support and ideas to how to treat this disease.

Back to you @jameswb when will you begin UV light treatments?

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Planning to begin within the next 1-2 weeks, or as soon as I can get in!

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@kg7382

Any suggestions for bras? I’ve been looking as my current flare is not responding to treatment. Thanks on advance!

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I have both Grover's and ACD. Cottonique has some 100% cotton elastic free options, yet if you are large breasted you won't get much support. The side tie doesn't work at all. Their 100% cotton 3 front tie bra is adequate. Yet you will have a lumpy look under a knit, but fine with a 100% cotton or polyester button down shirt. The most comfortable one for me with small breast is their bra liner. It has a casing at the bottom with latex free elastic. I am not allergic to latex, but a different element in rubber, MBT which is in most elastic, spandex and blended fiber. I open the casing and remove elastic and replace with 100% cotton drawstring.

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@jameswb

I was diagnosed with GD about 9 months ago, starting on my inner thighs, and now has spread from head to feet. The symptoms started with my wife itching, and 2 weeks later I had the same itching, and continued to track her itching to chest, back, and arms. Although the dermatologists are certain GD is not contagious, they cannot explain how we both have it (also eliminated scabbies). We of course thought it must be contact dermatitis, we changed bed, clothes, furniture, detergents, soap, food, etc., and had no effects. The itchy areas mostly do not have bumps or a rash associated, just terrible itching. TAC .1%, Eczema lotions with oatmeal provide only temporary relief, as do hot showers. Our next step is to try UV light treatments, as a close MD friend found this to be very effective.

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jameswb- go to the New Zealand Dermatology site and study Grover's, they also have photos. I have never heard of Grover's without a rash or bumps. I have 3 forms of eczema, Grover's is one and I am a classic case. New Zealand site list 5 criteria, and I have 4 of the 5 with the fifth being that most are male. It also list triggers. There are at least a dozen forms of eczema, even the NEA doesn't list Grover's as it is less common. I would search this site for other forms that may be more similar to your symptoms. Guessing what allergens you have won't work. Study the 5 Day Extended Patch Test for Allergic Contact Dermatitis. I guessed wrong for 10 years, after this test I learned what to avoid for this form and now am ACD symptom free. One of my various ACD symptoms was internal itching and stinging with no rash.

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Hi - I am a 65 year-old woman, andI was just diagnosed with Grover's Disease by a punch biopsy. I've had the rash for 6 months now, and it came on pretty much overnight. Traveling from a vacation in Denmark, back to California. I also have Hashimoto's, and have been on a very specific diet for the past 4 years, called AIP, Autoimmune Paleo protocol. While in Denmark, I ended up eating several things off the diet, including gluten. So, not sure how much diet contributes to GD. Though, it's hard to imagine the symptoms could come on that quickly - I felt fine the entire 3 weeks I was in DK. It seemed to come on during travel home. I am also wondering if it could be autoimmune related in any way.

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Hi @veggiema and welcome to Connect! That must be frustrating to have it come on so suddenly.

I wanted to introduce you to @gardeningjunkie @robrash @jameswb @kg7382 and @ptownmama as they have Grover's and may be able to offer support and ideas to how to treat this disease.

I also wanted to share this link to the Autoimmune Disease group on Connect, where you can discuss your autoimmune disease symptoms with others and potentially receive support.

Autoimmune Diseases: https://connect.mayoclinic.org/group/autoimmune-diseases/

Back to you @veggiema you mentioned you were diagnosed recently, what treatment have your physician's offered at this time?

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We have really struggled. I do have something that may help forever or temporarily. My husband was told to take 150,000 units of vitamin A per day (50,000 three times per day) for 2 weeks. The grovers was almost gone. Then after 2 weeks, he was supposed to go down to 50,000 per day and within a few days of the lower dose, it started coming back. 🙁 He also developed a second rash that we weren't sure if it was a reaction to the allergy pills (go figure) or a virus. That went away and is now back (without the allergy pills for weeks). I feel like he has some sort of systemic thing, but bloodwork and urinalysis are all normal. Someone else told me to try having him each a bunch of cilantro each day (but we haven't tried yet) and zinc (both topically and orally).

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@ptownmama

We have really struggled. I do have something that may help forever or temporarily. My husband was told to take 150,000 units of vitamin A per day (50,000 three times per day) for 2 weeks. The grovers was almost gone. Then after 2 weeks, he was supposed to go down to 50,000 per day and within a few days of the lower dose, it started coming back. 🙁 He also developed a second rash that we weren't sure if it was a reaction to the allergy pills (go figure) or a virus. That went away and is now back (without the allergy pills for weeks). I feel like he has some sort of systemic thing, but bloodwork and urinalysis are all normal. Someone else told me to try having him each a bunch of cilantro each day (but we haven't tried yet) and zinc (both topically and orally).

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Interesting about the vitamin A. A topical prescription Vitamin D3 topical is Calcipotriene Cream or Dovonex and has helped me. Developed to be primarily used for plaque psoriasis it seems to stall my GD breakouts. If already broken out it keeps the breakout from getting worse. Very expensive and I was better buying it with GoodRx the free coupon site on the internet than my Humana Medicare Pharaacy supplement. 60 gram tube without insurance around 300 but with GoodRx paid 100, yet it lasts. Even though the torso is a large area to cover it spreads well and takes very little. GD is baffling, as it comes and goes even when it seems the typical triggers have been avoided. AS I tell all, go to dermnetnz.org, best eczema site for less common forms of dermatitis or eczema like GD. Have been in remission now for almost 6 months, my longest break and only use the Calcipotriene about once every week or 2 if I start to feel a tingle and bumps beginning to form. Also believe my candida detox is helping all my eczema issues, (I have 3 forms), as residual candida in our intestines raises our histamines. No candida issues now after 6 weeks of detox and on maintenance plan. Basically zero processed sugar for life, no natural sugar as in fruit for 2 months and then only add back a few pieces a week.Zero carbs for 2 months and now can have small servings of non gluten carbs a few days a week. I feel fantastic and surprisingly to me, after 6 weeks of detox the candida symptoms disappeared along with my sugar craving. Yes sugar is an addiction and although my diet wasn't heavy in processed sugar, just a normal amount, I ate way too much fruit. At least 3 pieces a day and fruit is loaded with sugar. This sugar fed my candida residing in my intestines. Now it is killed because it starved to death. While dying it sends stong messages to our brain to be fed! An addiction just like nicotine or alcohol or other drugs. It will be interesting to note when my next break out happens with GD, as I know it will, but hoping this stalls the breakout longer.

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@ptownmama

We have really struggled. I do have something that may help forever or temporarily. My husband was told to take 150,000 units of vitamin A per day (50,000 three times per day) for 2 weeks. The grovers was almost gone. Then after 2 weeks, he was supposed to go down to 50,000 per day and within a few days of the lower dose, it started coming back. 🙁 He also developed a second rash that we weren't sure if it was a reaction to the allergy pills (go figure) or a virus. That went away and is now back (without the allergy pills for weeks). I feel like he has some sort of systemic thing, but bloodwork and urinalysis are all normal. Someone else told me to try having him each a bunch of cilantro each day (but we haven't tried yet) and zinc (both topically and orally).

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Sorry to hear your husband is dealing with this. Interesting about the Vitamins. I was just diagnosed summer 2018. I did have a short lived “remission” but have been dealing with it consistently since. I’m a 46 y/o female, no health conditions, no medications, not over weight, no food allergies... this just came out of no where. I am an RN and have likely been exposed to lots of things - but there doesn’t seem to be any sort of external link. 🙁 I will gladly share any wisdom as I venture down this road. Best wishes!

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Thanks for your reply! I appreciate your input!

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